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NACDD: Designing Long Term Services and Supports for the I/DD Population- A View of the States. Shirla Simpson
1. New Jersey and the Managed
Care System for Children and
Adults with Intellectual and
Developmental Disabilities
Shirla Simpson, Deputy Director
NJ Council on Developmental Disabilities
2. Established Managed Care for over
10 years in New Jerseyās
Childrenās System of Care for
Behavioral Health Services. The
provider is PerformCare which
supports members in the public
and private sectors.
Childrenās System of Care
3. PerformCare is a member of
AmeriHealth and is the NJ
Administrative Service Organization
(ASO) for the Childrenās System of
Care since 2009. (They are the
second ASO provider in NJ for the
CSOC).
The Childrenās System Provider
4. Access to Services
To access the Childrenās and Youth
services, parents, caregivers and
system providers can call toll free
24 hours a day, 7 days per week.
The system never closes.
5. Children and Youth with
Intellectual/Developmental
Disabilities
As of January 1, 2013, the Childrenās
System of Care assumed responsibility for
determining eligibility and providing services
to children/youth with I/DD.
6. Funding
All Family Support funding is
managed by PerformCare
which includes Respite Care.
Families also receive
assistance for services such as
Summer Camps through
PerformCare.
7. Adult System of Care
In 1995, NJ Medicaid began moving
Medicaid beneficiaries into managed
care. Persons receiving Medicaid
āenroll in a Health Plan which manages
their healthcare and offers special
services to which Medicaid clients are
entitled.ā
Taken from Division of Medical
Assistance & Health Services Website.
8. Managed Care Providers
There are currently 5 providers in NJ:
Amerigroup NJ
Healthfirst NJ
Horizon NJ Health
United Healthcare Community Plan
WellCare
All companies do not serve statewide.
9. New Legislation
In August, 2011 NJ Governor Christie
signed into law a 3 year Medicaid
Accountable Care Organization (ACO)
demonstration project. The project will
test the ACO as an alternative to Medicaid
Managed Care within the adult system to
Integrate social services.
ACO applicants are required to be
nonprofit organizations.
10. Managed Long Term Services
and Supports (MLTSS)
Effective July 1, 2014, MLTSS replaces
several Medicaid health plans including
the Community Resources for People
with Disabilities (CRPD). The CRPD was
serving children and adults.
Issues: The CCW was not transitioned
into this plan for the same services and
they do not qualify for NJ DDD services
under plan (day program).
11. Additional Issues for Families and
System under Managed Care
ā¢ Hope by system providers that
managed care MCO care managers
would provide the high level of care
coordination.
ā¢ Multiple providers of many services to
individuals in the system, therefore
many service plans.
ā¢ Perform Care is not in a care manager
role, family is assisted by different
person each time, not a constant.
12. NJ DD Council
ā¢ Have established Monthly meetings for
a small group of statewide Family
Support Council members to meet with
the Assistant Commissioner of DDD to
discuss many of these ongoing issues.
ā¢ Also Bi monthly meetings for members
to also meet with the Director of the
Department of Children and Families
and PerformCare.
13. Council Continuesā¦ā¦
ā¢ Advocate for all Managed Care
representatives to be trained in the
areas of Developmental Disabilities
for the individuals and their families.
ā¢ Thank you for your time!
Editor's Notes
President Kennedy had a sister, Rosemary, with a developmental disability. When he became President his sister Eunice who was Director of the family foundation, the Joseph P. Kennedy Foundation, asked him to take on the mental retardation as a major initiative. No President before or after him has made intellectual disabilities a major agenda.
In his transition before he took office he created the National Institute for Child Health and Human Developmental at the National Institute of Health. In 1961 again at Euniceās request he formed the Presidentās Panel on Mental Retardation. The panel was to look at the bio-medical and medical field of intellectual disabilities. The first charge of the Panel was to create a report in a year on how to combat mental retardation.
Elizabeth Boggs was a member of the Panel a nd also a volunteer chair for the National Association for Retarded Children, now the ARC; of the US. Dr. Boggs was also a parent of a child with significant disabilities. The report was completed in a year and because of Elizabeth Boggs and several others the report also provided a social area in the community area and declared the future is in the community, not in institutions.
As a result of the report, two ears later the Mental Retardation Services and Facilities Construction Act was passed in 1963. Its core principle was to build within universities research, treatment, diagnostic centers with a vision that these would become the hub of the future community service system.
The plan was unfulfilled because of President Kennedys assassination and the Vietnam War.
When the 1963 Act was passed there was an outcry from other impairment groups that Congress would put money and planning and resources for them. Some other groups were United Cerebral Palsy, Epilepsy Foundation , Spina Bifida Association and Learning Disabilities to name a few. Sen.Edward Kennedy convened a meeting that included Dr. Elsie Helsel , who was a mom of a son with cerebral palsy , Dr. Elizabeth Boggs, and others. Sen. Kennedy explained it made no sense for each group to have an agency and Act. Out of his concern the group coined ādevelopmental disabilitiesā. It is not a clinical term, it is not a diagnostic term, it is not a medical term. It was a political term to create an umbrella around a series of diagnostic conditions that either occurred pre-birth, at birth, shortly after birth, and would require lifelong services.
So the 1963 Act was renamed the Developmental Disabilities Act of 1970. A new definition was put in that had the additional categories, which was an attempt to stop the fighting for turfdom among advocacy groups of people with different medical diagnosis. The core principles of the DD Act are Independence (to have control), Productivity (to work or make other contributi9ons to a household or community), Integration (right to the same opportunities, resources as other Americans), Inclusion (to fully participate, be welcomed in social, educational, work and community life.)
The DD Act built on the 1963 Act, but what it did was take a small planning grant and actually created what we know today as the Councils on Developmental Disabilities. These were planning and advisory councils to the governor to begin to look at system and resources. The Administration on Developmental Disabilities (ADD) is the federal administering agency for the DD Act programs. ADD is the Administration on Children and Families (ACF) in the Department of Health and Human Services.
The Act created sister agencies, the University Center for Excellence on Developmental Disabilities (UCEDD) , for research and training, and Protection and Advocacy now called Disability Rights, the legal arm protecting the rights of people with developmental disabilities and the DD Councils , the advocacy arm.
The purpose of the Council is to engage in advocacy, capacity building and systemic change activities which contribute to a coordinated consumer and family centered comprehensive system and community services, individualized support and other forms of assistance. There are 55 Councils, one in every state , plus territories. Although most councils are situated in state government, councils are by law, independent of state government. The law states the state cannot interfere with the advocacy, capacity building and systemic change activities, budget personnel, state plan development or plan implementation of the Council. In addition, the Council shall not comply with state hiring freezes, reductions in force, prohibitions on travel and other forms of assistance.
Every five years each Council must write a plan for the following five years. This plan covers the following areas, called areas of emphasis: Quality Assurance, Child Care, Education and Early Intervention, Employment, Health, Housing, Recreation, Transportation, Formal and informal community supports.
Council membership mandates that not less than 60% of the Council shall consist of individuals with dd or parents or guardians of children with dd, and immediate relatives or guardians of adults with intellectual impairments who can not advocate for themselves. There is one member who is a person who previously resided in an institution, or ho haw a child who is presently, or previously resided in an institution. Remaining members shall include: Voc Rehab, Dept of Ed, Older American Act, Children Special Health Services, Medicaid, UCEDD, Disability Rights and one other local non profit group.
Council responsibilities include: Promote and support advocacy, systems change & capacity building activities for individuals with dd and their families. Conduct or support programs, projects and activities that improve the quality of life for people with dd, Develop a state plan, Establish and strengthen a program for the direct funding of a state self advocacy organization, support opportunities for people with dd who are considered leaders to provide leadership training for people with dd and support participation in cross disability and culturaly diverse leadership coalitions.